HIV and Its Treatment:

What You 

Should Know
HIV and Its Treatment:

What You Should Know

April 1999

The information in this document is based on Guidelines for

the Use of Antiretroviral Agents in HIV-Infected Adults and

Adolescents, developed by the U.S.Department of Health and

Human Services (DHHS) in conjunction with the Henry J.

Kaiser Family Foundation.

The Guidelines, which is a “living document” provides updates

in new advances in the treatment of HIV. The current 

version of the document is available on our web site:

http://www.hivatis.org
www.hivatis.org 2 1–800–448–04

HIV and Its Treatment: What You Should Know is a publication 

the HIV/AIDS Treatment Information Service (ATIS).ATIS provid

timely, accurate information on the latest federally approve

t reatment guidelines for HIV and AIDS through a toll-fre

telephone service and a web site.

HIV/AIDS Treatment Information Service

P.O. Box 6303, Rockville, MD 20849-6303

1–800–448–0440 (Toll Free)

1–301–519–0459 (International)

1–888–480–3739 (TTY)

atis@hivatis.org (e-mail)

http://www.hivatis.org (web site)

The DHHS agencies that sponsor the HIV/AIDS Treatment

Information Service are:

Centers for Disease Control and Prevention (CDC)

Health Care Financing Administration (HCFA)

Health Resources and Services Administration (HRSA)

Indian Health Service (IHS)

National Institutes of Health (NIH)

Substance Abuse and Mental Health Services Administratio

(SAMHSA)
www.hivatis.org 3 1–800–448–04

HIV and Its Treatment:

What You Should Know

I am HIV positive. What does that mean? Does i

mean I have AIDS?

Receiving an HIV positive test result means that you have been 

infected with HIV (Human Immunodeficiency Virus), the virus

that causes AIDS. HIV progresses to AIDS (Acquired Immune

Deficiency Syndrome) when your CD4 + T cell count drops belo

200 cells/mm3, and/or you develop an AIDS-defining condition.

What is a CD4+ T cell count?

A CD4+ T cell count is a measurement of a person’s CD4+ T

cells. HIV infects a person’s CD4+ T cells and uses these cells to

replicate (make copies of itself).As these cells are destroyed, th

person’s immune system is weakened, and the person is more

likely to develop an opportunistic infection.

What is viral load?

Viral load is the amount of HIV in a person’s blood. People with

high viral loads are more likely to rapidly progress to AIDS than

people with low levels of the virus.

What is HIV treatment?

HIV treatment is the use of antiretroviral drugs to decrease a

patient’s viral load. In most people who start HIV treatment

(antiretroviral therapy), the viral load drops to undetectable 

levels (below 500 copies/ml) within 12-16 weeks. However,

antiretroviral therapy is complex, and different people may have
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different results.Antiretroviral therapy has been shown to benef

HIV-infected persons with advanced HIV disease and weakened

immune systems. Many experts believe that treatment will also

benefit people with earlier stages of HIV disease as well.

Deciding Whether To Start Treatment

What kind of a doctor do I need?

Since treating HIV is a complex process, your doctor should be

an expert in treating HIV and AIDS. It is also important that you

doctor be someone you feel comfortable with, since you will

need to work closely with him/her in making decisions about

your treatment.Write down your questions and take them 

with you to your appointment.This will help you remember

everything you want to ask.Ask your doctor about the risks 

and benefits of HIV treatment.

What tests will be needed?

Before starting HIV treatment, your doctor should take your

complete health history, perform a physical examination, and 

perform several blood tests.These include a complete blood

count, a viral load test, and a CD4+ T cell count (see below).You

doctor should also perform other tests for infections (syphilis

screening, tuberculin skin test, toxoplasma antibody test, and, for

women, a gynecologic exam with Pap smear).Your doctor also

may perform other tests, depending on your symptoms.

Both the viral load test and the CD4+ T cell count will be done

on blood drawn at your doctor’s office. Both tests should be

done before starting HIV treatment.
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• Viral Load Test

The viral load test measures the amount of HIV in a 

person’s blood. Getting a viral load test before starting HIV

treatment is important for two reasons. First, it shows 

how far a patient’s HIV disease has progressed. Second, it

provides a baseline value for viral load before treatment.

After starting treatment, this baseline value will be used to

help determine how well the drugs are working.

The first viral load test should be done two different times

by the same laboratory, using the same type of test to 

ensure accurate results. Currently, the RT-PCR assay (Roche

is the only viral load test approved by the Food and Drug

Administration (FDA).The bDNA (Chiron) and NASBA

(Organon) viral load tests are also commonly used but are

not FDA approved.

If you have advanced HIV disease, your doctor may

recommend starting treatment after your first viral load test

rather than waiting for the results of your second test.

• CD4+ T Cell Count 

The CD4+ T cell count provides the number of CD4+ T cell

in a sample of blood.There are two important reasons to

have a CD4+ T cell count before starting treatment. First, it

helps show how well your immune system is working.

Second, it provides a baseline value for the CD4+ T cell

count before treatment.After starting therapy, this can be

used to help determine how well the drugs are working.

How will my doctor and I decide whether to

start HIV treatment?

The current recommendations for starting antiretroviral therap

are listed in the flowchart on page 7. You should talk to your
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doctor about whether starting treatment is right for you, and

about other options you may have.

Some important factors in deciding whether to start treatment

include whether you have advanced HIV disease or HIV symptom

and the results of your viral load test and CD4+ T cell count. Othe

very important factors are your own willingness to begin drug

therapy, and the likelihood that you will be willing and able to 

follow (adhere to) your treatment. Adherence is very important 

in HIV treatment, because drug resistance often occurs when a

patient skips doses or takes a “drug holiday” (For more informatio

on adherence, turn to page 13).

You also must weigh the potential benefits of drug therapy with

the potential risks. For example, if you begin therapy, you might

need to continue it for a long time, possibly for the rest of 

your life. Even with therapy there is a chance of developing 

drug resistance. Other potential risks include drug side effects,

drug interactions and toxicity, and negative effects on lifestyle

(including the inconvenience of having to take many medications

each day).Talk to your doctor about the potential benefits and

risks of therapy.

I am HIV-infected but do not have any symptoms

Should I start treatment?

You and your doctor should consider several factors in deciding

when to start drug therapy. As discussed above, your viral load

and CD4+ T cell count will help determine whether you should

s t a rt tre a t m e n t .You also should consider how well you will be ab

to fo l l ow your tre a t m e n t , and weigh the potential benefits and risks
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Making Decisions about HIV Treatment

 Yes

 No

 Yes

 No

 Yes

 No

 Yes

 No

 Yes

* The strength of this recommendation is based on prognosis for disease-free survival as

shown by data from the Multi-Center AIDS Cohort Study (MACS) and the patient’s

willingness to accept therapy. ** See page 5 for more information on viral load tests.

Discuss treatment

options with your

doctor- some

doctors would treat

you, others would

delay treatment and

observe.

Have you been diagnosed

with advanced HIV Disease?

Do you have HIV symptoms,

such as thrush or

unexplained fever?

Is your CD4+ T cell count less

than 500 cells/mm3

?

Is your viral load count greater

than 10,000 (bDNA)** or greater

than 20,000 (RT-PCR)?

Is your viral load count less

than 10,000 (bDNA) or less

than 20,000 (RT-PCR)?

Start antiretroviral

therapy

Start antiretroviral

therapy

Treatment is

recommended

Treatment is

recommended
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Starting Drug Therapy

If I start therapy, what kinds of medications will I

have to take?

Antiretroviral drugs are used to slow virus replication (that is, the

virus making copies of itself). This will slow the progression of

HIV disease.

There are three classes of antiretroviral drugs that are FDAapproved: NRTIs, PIs, and NNRTIs. (For the full names of these

drugs, see the box below.)

The preferred treatment for HIV is a triple drug combination

(Highly Active Antiretroviral Therapy, or HAART). The preferred

HAART regimens are two NRTIs and one PI, or two NRTIs plus

efavirenz or two NRTIs plus ritonavir and saquinavir.

An alternative recommended HAART regimen is two NRTIs plus

nevirapine or delavirdine. However, this regimen is less likely to

keep the viral load suppressed.

• NRTIs (Nucleoside Reverse Transcriptase

Inhibitors): zidovudine (AZT), didanosine (ddI),

zalcitabine (ddC), stavudine (d4T), lamivudine

(3TC), CombivirTM (AZT + 3TC), and abacavir

(ZiagenTM ).

• PIs (Protease Inhibitors): saquinavir (InviraseTM &

FortovaseTM ), ritonavir (NorvirTM ), indinavir

(Crixivan®), and nelfinavir (Viracept®).

• NNRTIs (Non-nucleoside Reverse Transcriptase

Inhibitors): nevirapine (Viramune®), delavirdine

(Rescriptor®), and efavirenz (SustivaTM ).
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In general, it is not recommended to take only two NRTIs

(because the initial decrease in viral load is not sustained in 

most people).Also, it is not recommended to take only one 

antiretroviral drug (except for pregnant women, who should 

take zidovudine).

How will I know if my treatment is working?

In general, your viral load is the most important factor in 

determining whether your medications are working. Other

important factors are your CD4+ T cell count, your recent clinic

history, and findings from a physical examination by your doctor

Your viral load should be tested again 2–4 weeks after you star

treatment. If your drugs are working, your viral load should be

decreasing, and it should continue to decrease as you continue 

to take your medication.

Throughout HIV treatment, your viral load should be tested

every 3–4 months to make sure your drugs are still working.

If your viral load is not undetectable within 4-6 months after

starting treatment, you should talk to your doctor about possib

changing your medications.

How fast, or how much, your viral load decreases may depend no

only on the drugs you are taking, but on other factors as well.

These factors can include your baseline viral load and CD4+ T

cell count (before starting therapy), whether you have used 

antiretroviral drugs before, whether you have any AIDS-related 

illnesses, and how closely you have followed (adhered to) your

therapy. Talk to your doctor if you are concerned about your vir

load not decreasing.CD4+ T cell counts also may help show how

well your medications are working. After starting drug therapy,
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your CD4+ T cell count should be tested every 3-6 months. Talk t

your doctor if you are concerned about your CD4+ T cell count.

My doctor wants to change my medications.

Why would this be recommended?

There are two possible reasons for this. One possible reason is

drug intolerance (side effects which make it difficult to take the

drugs as prescribed). Another possible reason is drug failure

(your viral load is not decreasing).You should ask your doctor 

to explain why the change is needed in your treatment.

If the reason is drug intolerance, your doctor may change the

drug(s) causing the problem. In this case, your doctor may

substitute drugs with different ones of the same potency and clas

If the reason for changing your medications is drug failure, your

doctor should change all your drugs to new ones you have neve

taken, if possible. If you have been taking three drugs, and all

three drugs cannot be changed, then at least two drugs should b

changed.This is very important to reduce the risk of developing

drug resistance. Before changing your medications, you should

talk to your doctor about:

• all the antiretroviral medications you have taken before,

• the potency of the new drugs your doctor recommends,

• possible side effects of the new drugs,
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• how well you will be able to follow (adhere to) the new

treatment, and

• the number of antiretroviral drugs remaining that you have no

yet used.

If you have no treatment options for approved drugs, you may b

able to participate in a clinical trial using drugs that are being

studied. For more information about participating in a clinical tria

ask your doctor, or call the AIDS Clinical Trials Information

Service (ACTIS) at 1–800–874–2572 or connect to the ACTIS

web site at http://www.actis.org.
Notes
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Adherence

What is “adherence”? 

Adherence refers to how closely you follow—or adhere to—a

prescribed treatment plan. It includes your willingness to begin

treatment, and your ability to take medications as prescribed.

Studies have shown that adherence may be difficult for many

patients, including people who are HIV infected as well as peopl

who take daily medications for other diseases.

Is adherence important for HIV treatment?

Yes.Adherence is a major issue in HIV treatment, for two

reasons. First, adherence is important for treatment effectivenes

(how well the medications work to decrease viral load).When

you skip medication doses, the virus has the opportunity to 

replicate (make copies of itself) more rapidly thereby making it

difficult for the drugs to be effective. Other factors that may

affect treatment effectiveness include your baseline viral load 

and CD4+ T cell count (before starting therapy), whether you

have any AIDS-related illnesses, and whether you have used 

antiretroviral drugs before.

Second, adherence to HIV treatment is critical to prevent drug

resistance. Clinical studies have shown that when you skip 

medication doses, or take a “drug holiday,” you may develop

strains of HIV that are drug resistant.This may leave you with

fewer treatment options if your viral load does not decline.

Because drug-resistant strains can be transmitted to others, dru

resistance has serious consequences not only for you, but for th

larger population as well.
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What makes adherence difficult for some 

HIV-infected patients?

There are several reasons why some patients may have difficulty

adhering to an HIV treatment plan. One reason is that HIV 

treatment plans are very complicated. Studies have shown that

people have difficulty adhering to even the simplest treatment

plans.Yet HIV treatment may involve taking 25 or more pills eac

day. In addition, some HIV medications must be taken on an

empty stomach while others must be taken with meals.This can

be difficult for some people, especially for those who are sick o

experiencing HIV symptoms. In addition, HIV-infected patients

may need to continue their treatment regimen for a long time,

perhaps indefinitely.

Other reasons that HIV-infected patients have given for 

non-adherence include unpleasant side effects such as nausea,

sleeping through a dose, being away from home, being too busy,

feeling sick or depressed, or simply forgetting to take their 

medication.

I’m considering starting HIV treatment. How

can I be sure I’ll be able to adhere to a 

treatment plan?

If you are considering HIV treatment, there are several steps yo

can take before starting treatment to maximize adherence:

1.Play an active role in your treatment plan. Ask your 

doctor to describe all your treatment options, including

potential benefits and risks of starting treatment now.

Also ask your doctor to explain any side effects or other

problems you may have related to your medication. It is

important that you understand the goals of treatment, and
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that you are fully committed to the treatment plan that

you and your doctor decide on.

2. Talk to your doctor about personal issues that may affect

your adherence. Studies have shown that adherence may

be more difficult although not impossible for people 

dealing with substance abuse or alcoholism, unstable 

housing, mental illness, or major life crises.Adherence 

also may be more difficult for patients who do not have

advanced HIV disease, who must follow a very complex

treatment regimen, or who have had problems taking

medications in the past.Talk to your doctor about these

or any other issues that you feel may affect your 

adherence to a treatment plan.

3. Consider a “dry run”—practicing your treatment regimen

using jelly beans or mints.This will help you determine

ahead of time which doses might be difficult.

4. After you and your doctor decide on a treatment plan,

ask for a written copy. This should list each medication,

when and how much to take each time, and if it must be

taken with food or on an empty stomach. It also should

include your doctor’s name and phone number, and the

date of your next visit.

5. Most importantly, talk to your doctor about how to tailor

your treatment plan to your lifestyle. For example, many

patients find it helpful to identify things they normally do

at the times they will be taking their medication. Studies

have shown that patients who arrange their medication

schedule around their daily routines adhere to their 

treatment plans better than those who don’t. Activities

that you might use to help you remember when to take

your medications include waking up in the morning, taking
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a child to school, leaving work, or watching a TV show. If

you decide to do this, make sure you remember to take

your medication before the activity, not after.

Your commitment to a treatment plan is critical.Talk to your

doctor about any concerns you may have about starting – and

adhering to – your treatment plan. For many people, it takes 

two or three office visits to feel comfortable about starting a

treatment plan.

I’ve started HIV treatment. What can I do to 

maximize my treatment success?

As described above, the effectiveness of your treatment will

depend on several factors. One of the most important things 

you can do is find a strategy that works for you.This will help

you adhere to your treatment plan as closely as possible. Some

other things you can do to improve adherence include:

1. Use daily or weekly pill boxes or egg cartons to organize

your medications. Some people find it helpful to count and

set out a week’s worth of medications at a time, with one

box or egg space for each part of the day.Try to do this at

the same time each week, for example, every Sunday night

at bedtime.

2.Use timers, alarm clocks, or pagers to remind you when 

to take your medication. For each dose, try to take your 

medication at the same time each day.

3. Try keeping your medications where you’ll take them.

Some patients find it helpful to keep their first morning

dose next to the alarm clock or coffee pot. Others like

to keep backup supplies of their medications at their

workplace or in their briefcase.
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4. Keep a medication diary.Try writing the names of your

drugs on a 3x5 card or in your daily planner, and then

check off each dose as you take it.You might want to try

writing yourself a reminder in your calendar or planner 

to take any doses that are difficult to remember.

5. Plan ahead for weekends, holidays, and changes in routine.

Many studies have shown that weekends are a serious

problem for adherence. Decide ahead of time how you

will remember to take all of your doses. Also, if you are

going on vacation, traveling on business, or changing jobs,

write out a plan for remembering your medications.

6. Develop a support network.This may include family

members, friends, or coworkers who can remind you to

take your medication. Some patients also find it helpful to

join a support group for people with HIV infection.

7. Don’t run out of your medication. Contact your doctor or 

clinic if your supply will not last until your next visit.

I’m having problems taking my medication. Wha

should I do?

Tell your doctor if you are having any problems related to your 

medication, including:

• Side effects. If you are experiencing side effects, tell your 

doctor what they are, and when you notice them.

• Skipped doses. Do not be afraid to admit to skipped

doses.Your doctor knows that some people do have

difficulty taking each dose as prescribed. If you have

skipped doses, tell your doctor which medication(s) you

skipped, and when.
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• Difficulty taking your medication as prescribed. If you are

supposed to take medication on an empty stomach, or

with food, and this is difficult for you, tell your doctor. If

there is a time of day that is too difficult for you to take

your dose, tell your doctor this, too.

• Your treatment regimen interferes with your lifestyle. If

you feel your treatment regimen is too complicated or

unrealistic for you to follow, talk to your doctor about

other options you may have. It is important that you tell

your doctor right away about any problems you are having

with your medication.Your doctor needs this information

to help you maximize the benefit from your treatment

plan and provide workable options, if necessary.
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Other Questions You May Have

I am HIV-infected, but my viral load is 

undetectable. What does that mean? Am I 

cured of HIV?

No, this does not mean that you are cured of HIV or AIDS. It

means that the amount of HIV virus in your blood is so low tha

the viral load test cannot detect it.You are still infected with HI

and should continue to practice risk-free behaviors.You will also

need to see your doctor on a regular basis.

My doctor and I have decided not to treat my

HIV infection. Do I need to have my viral load 

and CD4+ T cell count tested again?

Yes. HIV-infected persons who have not started drug therapy

should have a viral load test every 3–4 months and a CD4+ T ce

count every 3–6 months, in general.Talk to your doctor about

when you should be tested again.

I went to the doctor because I had flu-like

symptoms. The doctor recommended an HIV

test. Why?

The doctor wants to rule out HIV infection as a possible cause

of your symptoms. Between 50% and 90% of people infected

with HIV will have flu-like symptoms 2–4 weeks after infection.

Some of these symptoms include fever, swollen lymph nodes,

sore throat,rash, body aches, diarrhea, headache, nausea, and

vomiting.This stage of infection is referred to as acute primary

infection.
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If your HIV test comes back positive, you should talk to your

doctor about the potential benefits and risks of starting drug

therapy. Most experts support starting therapy during acute 

primary infection.This is based on the theory that starting 

therapy early in the infection will keep an HIV-infected person

healthier longer.

I am HIV positive and pregnant. What should I

do about drug therapy, and will my baby be

born HIV positive?

If you are HIV positive and pregnant, or if you suspect you are

pregnant, you should talk with your doctor as soon as possible

about your treatment options. No one can tell you for sure if

your baby will be born HIV positive. However, there are steps

you can take to reduce the risk of transmitting HIV to your bab

Currently, the only drug proven to reduce the risk of transmittin

the HIV virus to the baby is zidovudine (AZT).Treatment should

begin after the 14th week of pregnancy and continue until deliver

During labor, zidovudine will be given to the mother intravenous

After birth, the baby will receive zidovudine for the first 6 weeks

of life.

You should ask your doctor about the potential benefits and

risks of antiretroviral therapy for you and your baby. Other 

factors to consider include your viral load and CD4+ T cell

counts, whether you have already started antiretroviral drug

therapy, and the stage of your pregnancy.

For more information on HIV infection and treatment, including 

pregnancy and HIV, call the HIV/AIDS Treatment Information 

Service at 1–800–448–0440 or connect to our web site at
www.hivatis.org 21 1–800–448–04

http://www.hivatis.org.This service can also provide you wit

a copy of the DHHS recommendations for reducing perinatal 

HIV transmission.

HIV/AIDS Treatment Information Service

P.O. Box 6303, Rockville, MD 20849-6303

1–800–448–0440 (Toll Free)

1–301–519–0459 (International)

1–888–480–3739 (TTY)

atis@hivatis.org (e-mail)

http://www.hivatis.org (web site)

The DHHS agencies that sponsor the HIV/AIDS Treatment

Information Service are:

Centers for Disease Control and Prevention (CDC)

Health Care Financing Administration (HCFA)

Health Resources and Services Administration (HRSA)

Indian Health Service (IHS)

National Institutes of Health (NIH)

Substance Abuse and Mental Health Services Administratio

(SAMHSA)